Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndromehttp://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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Major Public Media Campaign Launched - This WILL Get the Attention of MILLIONS!

From a news standpoint, it is very difficult to get news reporters to report on something unless there is some action, something new or some event.

The NIH / FDA study was something new.

Reporters are accustomed to people with a fight calling them and asking them to do story. But if those people don't take any action in their cause, then it seems to the reporter that the people are wanting the news media to fight the battle for them. In other words, they want the reporter to stick their neck out when the people urging for news reports are not willing to put their own action behind their words.

If we take action in a public way, then we will have something that they can report on.

Tina does a far better job of updating on this campaign. But quickly much is going on and at a very fast clip. Voting on Logos is being done and there are some very professional logos to see. We have passed the 900 member mark and have over $3,300 in donations with more coming in. But we do need to get to the $8,500 mark or we can not get that 1/2 page Advert in the Washington Post.
Please hit the link, join, donate if you can, make your voice heard, help with ideas for the Ad, fundraising, etc. This is YOUR time to be a part of something that will make big changes and get us out of bed and out of the house and into a real life.

Please get to the link and see what all new stuff is going on. Tina keeps the site updated and we sick are playing a big role in what we want to see and have out into the public.
Money is tight for everyone. I know this. But every little bit gets us closer to getting our message out to the public/senior policy makers/journalists so that they really understand what CFS/ME does and what this new viral family has been doing for over 30 years. The public doesn't understand that this virus and its mutations (prob) have been in the nation's blood supply/blood products for over 30 years. They do not understand that THEY and their family are at risk for this virus and the possible diseases and cancers that are believed to be caused/or part of the cause of this virus family. WE must get this critical information out so that it is understood what really this research means to every single person in the US and abroad.

Please join and donate if possible. A website is going up soon and that will draw in thousands, if not millions of people to this campaign and to get access to real and valuable information that they must have now.
Our window is closing soon and we can not let the CDC win. They want this whole Retrovirus research killed off and out of the public eye. We can not let them do that to us and the rest of the population. Not to the unborn, the children, the young people and the Moms/Dads that must be there for their kids. Help us. Be a part of this solution.

I am sorry that the First XMRV conference did not do all that we sick thought that it might.
I figured it was just for show and that there would be ego and organizations battles between those that "found" and those that did not "find" and that not much would be acommplished.

Please do not wait for Collins, Fauci and the rest of the NIH to do much for us. Unless we see grant money shooting out to the private researchers (Mikovits, Klimas, Peterson, etc) as well as the Federal health orgs getting major funding for real research soon, in the next few months, you won't be seeing much of any real advancement. That's just the way Washington really works.

WE must be the ones to help WPI with funding. WE must be the ones to get our message(s) out to the public via the Washington Post and other major and local media. Once we get the real messages out to the public the public will get mad and the political machines of Washington will start to move.

Donate to the ME/CFS Worldwide Patient Alliance so that we can get this AD out to the world.
As you all saw, games and stupid petty battles were played at this conference and nothing of real value came out of this. Or rather, we shall see if indeed real funding and movement comes out of this - I don't expect much though.

Who is going to be designing the advertisement? It may be worth getting a trained professional to do it.

It needs to be catchy in an elephant in the room sort of way and it needs to be consise. Most people are aware of CFS at least in name, but the most important point to stress, at least in my opinion is (a) it costs the US economy over $20 billion dollars per year (Jason et al), it effects about 1.2 million Americans (only a general and very statement about quality of life is necessary, specifically the fact that it prevents sufferers from working full time and having no energy to have a family - these are the points people will most relate to). There is no known treatment NOT because scientists have not found biological abnormalities, but because no money is spent on research. Then of course that it has been published in several top American journals (PNAS and Science) that a recently discovered human retrovirus has been associated with this disease and poses a risk to the national blood supply.

The overall point is this - the government has long ignored our disease due to negligence and we therefore humbly request private interests to research our disease.

I am sorry that the First XMRV conference did not do all that we sick thought that it might.
I figured it was just for show and that there would be ego and organizations battles between those that "found" and those that did not "find" and that not much would be acommplished.

Please do not wait for Collins, Fauci and the rest of the NIH to do much for us. Unless we see grant money shooting out to the private researchers (Mikovits, Klimas, Peterson, etc) as well as the Federal health orgs getting major funding for real research soon, in the next few months, you won't be seeing much of any real advancement. That's just the way Washington really works.

WE must be the ones to help WPI with funding. WE must be the ones to get our message(s) out to the public via the Washington Post and other major and local media. Once we get the real messages out to the public the public will get mad and the political machines of Washington will start to move.

Donate to the ME/CFS Worldwide Patient Alliance so that we can get this AD out to the world.
As you all saw, games and stupid petty battles were played at this conference and nothing of real value came out of this. Or rather, we shall see if indeed real funding and movement comes out of this - I don't expect much though.

Click to expand...

For those who don't know, the Cause was originally named "Our Voices, Our Message, Our Lives", but it was being confused with PANDORA's slogan, so it was changed by patient votes to "ME/CFS Worldwide Patient Alliance". This
Cause on FB is dynamic, with patient input constantly, and we are voting on our logo right NOW...until Monday, Sept. 20, 2010...please do join, and
vote your fav...they are not perfect, but will garner attention, and we can
'tweak' them as we go along, ok? So just vote on any one right now, so
we can get this show on the road! Also WATCH for BIG EVENT coming
any day now...you'll want to participate in this! In just over six weeks, we
have over 1038 members and close to $5K! We need $8K for the first
ad, and we'd like it to be out there by the CFSAC meeting, ok? Please
go now, and join:

Guys: Get to the site and read what the Team is doing. We are moving fast and much is going on. In about a 36 hour period, we brought on about 60 members and over $1,000 (or more, can't remember!).
This is OUR CHANCE. This is a political movement for US. Go see what our TexasFriend says, read, join, add your ideas/comments/thoughts (they are USED and implemented) and donate if possible (and it does not cause you financial problems).

Guys: Please hit the Causes site and see all that is going on and is about to happen. The logos are out there for voting on and they are very professional - I liked all of them so what ever you all pick is great with me!

We have broken past the half way mark on donations for getting our AD. As I stated elsewhere, Marly will have exact dollar amounts as she is ULTRA careful about ensuring all money for the Campaign goes to the Campaign. Thus far, not a single cent has been spent on anything. ALL of that money will be spent on the Washington Post AD. This means that all work is being done by the CFS sick - but by people who have had amazing careers (pre-CFS/ME) in areas critical to a major advocacy campaigns including: public relations, journalism, graphics, web development, law, research/fact checking, medicine/science for ensuring everything written is bulletproof, advocacy leadership of very large groups, and many other areas with people who have great passion and bright minds.

I'm sure Tina will come in behind me and add all the really cool and great stuff going on. But, I wanted to brag about how well we are doing and in such a short time!!!

I expect that when our amazing ADS come out for review by the members, that tons of money will flow in. I know the people working on those ADS and they have talents that would cost thousands of dollars for just the AD text and graphics. And NO! I have not seen the ADS but will see them all when the members see them. So exciting!!!!!

So, stay tuned, hit the Causes site, and soon the logo votes will be announced, the new ultra well done website will be out and open for "business" and we also have a rather FUN and Exciting event planned in the next week or so.

Please join and give us your comments and ideas. As noted on the Causes site, many of your ideas have been used and are part of the campaign, fundraising, and ADS input. If you can't donate - big deal. We NEED your brains and ideas so that we have the very best possible AD for the Post.

Also remember that this Campaign is ongoing. This means that we will continue to put ADS into other newspapers and media outlets. The game plan is to hit everywhere possible with a strong message.
So basically, this is a true political movement much like the HIV/AIDS people were forced to do back when they were dying and ignored, and demeaned. THIS is OUR Political Movement.

Please hit the site and see all that is going on and add your ideas. Donations are always welcomed :Retro smile: but not necessary to be a part of something so critical and yes, historical. Just join and give us your ideas.

Hillary Johnson wrote Osler's Web - OUR bible and history book so that our history is not forgotten into the future. WE are now starting a massive movement that will pick-up where Ms. Johnson's book has led us.

Very exciting times right now! Be a part of this movement and part of your own cure. Thanks!!!!

WE have a logo!!! It's Great!!! Our members voted on the new logo and it really is unique and just plain cool!!! Hit the link and see the new logo!

Also, on Tuesday, 21 Sept we are making a BIG and FUN announcement!!!!

Get to the FB link and see all that is going on! We are at the 1,080 membership mark and have made over $5,000.00 in about 7 or so weeks. Those numbers are great for such a short time. We are moving it out and the website will be up soon, the 3 different very hard-hitting ADS for the Washington Post will be out soon also, and then the members will be asked for ideas and input on the ADs.

Be a part of this massive WORLDWIDE campaign!!! Get involved, see what the Team is doing and see if you can help. We love help!!!! We also love ideas and input!

Guys: The days of complaining only to eachother has come to an end. The new ERA of insisting those that we pay with our taxes are now the targets for our complaining, ideas, and insistance that our disease be dealt with and major funding for public/private research be gotten. We MUST have medications NOW, not years from now. We must have clinical trials and we must have access to the meds that the FDA has decided should not be allowed to us very sick - why? who knows.

1) Through the cause pages at http://www.causes.com/causes/511536?m=1a240be5&recruiter_id=40533665. You can also make a recurring monthly donation. The minimum for a one-time or recurring donation is $10. You will be receiving an automatic e-mail confirming the donation. Causes is a 501c3 donor-fund organization and the money donated through is processed by Network for Good.

2) If you are not on Facebook and you prefer to donate by credit or debit card, here are your other choices:

a) Google Check Out -

Go to P.A.N.D.O.R.A.'s home page at www.pandoranet.info - Please note that because Google has given P.A.N.D.O.R.A. a grant, any associated processing fees through Google are absorbed by Google. If you donate $10 through Google, it will save P.A.N.D.O.R.A. the cost of fund-raising fees.

b) PayPal - You can donate through the home page of P.A.N.D.O.R.A. www.pandoranet.info. Be sure to write in the cause name intended as P.A.N.D.O.R.A. currently has 7 causes on Facebook. Please note that P.A.N.D.O.R.A. is in the process of changing not only the PAYPAL donation page, but also their main donation page too. For now when you click PAY PAL it will say NEI Center, but you can add a note that your donation is for the MCWPA Campaign. If you are not able to do add your memo, then please e-mail P.A.N.D.O.R.A. at contact@pandoranet.info. Please include in the subject line Donations to MCWPA Campaign." WE WILL ADVISE YOU OF CHANGES IN THE P.A.N.D.O.R.A.s DONATION PAGE AS THEY ADVISE US.

c) American Express Members Give- On this page you can make a monetary donation as well as donate using your AMEX miles. You can donate as little as $5. It can also be a one-time or recurring monthly donation. You can also dedicate your donation as a gift in someone's name or in memory of someone special. There is also a box where you can list the intended program: Add the Cause's name please.

3) If your prefer to donate by check, make it out to P.A.N.D.O.R.A., Inc. Send it to:

P.A.N.D.O.R.A., Inc.

(Patient Alliance for Neuroendocrineimmune Disorders

Organization for Research & Advocacy)

255 Alhambra Circle

Suite 715

Coral Gables, Florida 33134

Be sure and mark the check as being for the MCWPA Campaign. Also note if you prefer to remain anonymous, include a note saying so.

CAN I DONATE ANONYMOUSLY?

Yes, you can. Whichever way you choose to donate please specify that it is to be anonymously and specify whether you want to receive a letter/receipt from us or not. Please be aware: If you donate through Causes and you have a profile on Facebook, your name and profile picture will be shown whether you donate anonymously (meaning only that the charity organization will not have your personal information for their records). If complete anonymity is important to you DO NOT DONATE THROUGH THE CAUSE-PROJECT PAGE ON FACEBOOK. Send P.A.N.D.O.R.A. a check with a note specifying that the donation is to be completely anonymous with no acknowledgements of any kind from the charity.

ARE DONATIONS TAX DEDUCTIBLE? YES!!!!!!!!

Yes, P.A.N.D.O.R.A. will return these donations to us in the form of an advocacy grant. P.A.N.D.O.R.A. is donating the administrative fees of the Cause Page on Facebook and any additional operational expenses associated with this unique patient-driven fund-raising effort. P.A.N.D.O.R.A. is a 501(c)3. Their number for tax deduction purposes is 550795076.